I Can't Trust Results- Frustrating

[Sharon C.]

When my son was disgnosed with celiac a few years ago, I asked my doctor for a blood scan. They didn't even know what blood test to order because in the 40 years of his career, this doctor had never diagnosed anyone with celiac. They called the lab to ask them what test I should get. So I had a blood test, and they said it was negative.

In the meantime, I continued eating gluten products, drinking beer, eating breads. I only had one bowel movement per day, but it was often "not normal", either too watery, loose, or just not right. The color was not white or gray, but it was not formed. Ever. I suffer from excema on my hands for years. A few years ago, at 33, I burst a disc in my back. At 36, I have now just been diagnosed with arthritis in both hips, moderate. I am suddenly allergic to more foods than I have ever been. My scratch test came up positive for apples, pears, peaches, apricots, corn, soy, yeast, cottonseed, peanuts, hops, onions. Also, the test said I am negative for tomatoes and mushrooms but I cannot eat either one. My face gets red like a sunburn and I break out with excema sores immedaitely after eating tomato and the white capped mushrooms have me consistently doubled over in pain, so I avoid them. I also don't process carageenan very well and avoid it. They only tested for allergies, not intolerances. They only tested for foods, not preservatives or other additives. I think I have perforated intestines that allow whole proteins into my bloodstream. I used to be able to tolerate many of these foods, but I am now showing to be allergic to almost everything I try to eat.

Since the summer, I've been having a strange rash different than my excema, and the first time I ever saw it, it was completely symmetrical. I got very itchy on my hands between my wrist and thumbs, on that bone that's there. It itched, and inadvertantly I scratched it, not thinking, and the next morning I woke up to two dark red scabs that formed over those bones. Then, I began having itchy patches on my legs that turned into dark red scabs. They'd go away and then come back. Suddenly last month, my elbow began to itch and when I scratched it, I felt little bumps all over my left elbow. The next day, I began developing bumps on the back of my other elbow. Then, as days passed, I began breaking out all over, with little clusters of bumps that resembled bug bites at first. On my forearems, tops of my hands, knees, legs, ankles, on my back shoulders, the center of my back right over my butt, a couple on my butt cheeks.

I feared that my dogs gave me something. I ran a flea comb through them and one dog ( a tiny chihauhau) had a little flea excrement on him and I bathed and treated all three dogs for fleas. The troubling thing about this rash is that my dog did develope a little bald spot on his leg, which could have been suggestive of mites, but they scratched it and looked under a microscope and there were no mites, but I had him treated anyway. I also told my doctor and treated myself and my family for mites, just in case. I used the mite medication twice, yet continued breaking out. My husband and son never broke out. I had the dog treated a second time when I continued breaking out. He has no fleas or mites.

I went back, had them do a skin biopsy. Of course, it is negative. The derm doctor thinks I should be able to trust the results of the test. The test came back saying something suggestive of flea bites. He did not give me a copy of the test. Apparantly, they can see urticaria under my skin but not anything suggestive of dermatitis herpetiformis.

Fleas would never be able to live here- I have no rugs. All hard wood flooring with throw rugs that are washed weekly in hot water. The dogs are not allowed to sleep on my bed. I have so many red welts and scratches, I would have had to be infested with fleas to get this kind of reaction. Can you get one or two flea bites and break out all over your entire body except for your face and neck?

The other night, I ate some thick cut chips with sea salt and I became dramatically itchy all over again. I've been gluten free since about 10/18 and the itch and rash was calming down and feeling better. After I ate those chips, it was definitely aggrivated. You are supposed to avoid sea salt when you have active dermatitis herpetiformis.

The doctor did take twp pieces of skin from my arm. One was a lesion that could have been scratched, it was hard to tell, and the other normal skin from nearby.

This rash no longer resembles mosquito bites, or flea bites, and I still have it since the last couple of weks in September, and it is taking a really long time to heal, and gets irritated. How can this be flea bites?

He wants to put me on zyrtec.

[Sharon C.]

I guess my questions are:

Can I really consider this negative when I do have symptoms of Celiac? Should I go to a different dotor and get another biopsy? If the biopsy was done when I already went on the gluten free diet for a few weeks, would that matter? Can you get one or two flea bites and break out all over your body with a dermatitisherpitiformis looking rash, except for your face and neck, which is coinicentally, a place where dermatitis herpitiformis doesn't usually go?

I wish this test had been more definitive.

Thanks in advance. My post is sort of a vent/question post.

[plantime]

Celiac cannot be ruled out, only in. Since you had a negative blood test, it could just be that you do not have enough intestinal damage to get a positive blood test. If you try the diet for six weeks to three months, you can determine for yourself if you are gluten intolerant. Your rash does not sound like anything I have ever seen caused by flea bites, but I suppose it is possible, if you are allergic to fleas. I'm sorry you are in such misery, I cannot imagine being broke out like that.

[gandm]

You could have something I've learned about lately, sub-clinical celiac disease. I've learned celiac disease is not well understood in the US, is diagnosed at 60 and over in 1/5 of the patients, etc., can cause inability to lose weight when you'd think with all the upset stomache stuff it would be the opposite, etc....things doctors don't always know. I'd use the pc -- or a physician referral -- or this message board -- or just try google and recheck refs...to find an expert in your general area. It's so important, I'd even travel if I had to. Best.